The European Respiratory Society is funding a new project to improve diagnosis and care for primary ciliary dyskinesia (PCD) and ELF is looking for people with experience of PCD to get involved.
PCD is a rare genetic chronic condition that causes mucus build up, leading to swelling and infection in the airways and ears.
The project is a clinical research collaboration (CRC) called BEAT-PCD (Better Experimental Approaches to Treat – PCD) and is a network of people with an interest in PCD. The aim of this CRC is to advance research into PCD to improve diagnosis and patient care.
BEAT-PCD is looking for people with PCD, suspected PCD or people who have family members with PCD to join and advise this new European initiative.
The aims of BEAT-PCD
What would you be asked to do?
BEAT-PCD wishes to involve patients in all their research activities and encourage communication between patient organisations from different countries. Examples of things patient representatives will be asked to do include:
We want to encourage people from all across Europe to get involved. If you are interested in joining with other patients and healthcare professionals in the BEAT-PCD network, please contact Jeanette Boyd at firstname.lastname@example.org
BEAT-PCD has launched a research project to learn more about the impact of COVID-19 in people with PCD. It involves PCD patients with COVID-19 completing a series of questionnaires to monitor the progression of symptoms.
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